Real People: Lyme disease survivor becomes advocate for awareness

Published: Sunday, May 5, 2013 at 02:52 PM.

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Finally, Clark had another Lyme test, which confirmed her suspicions. In Sept. 2009, she started going to South Carolina to see a Lyme specialist, Dr. Joseph Jemsek, who has since relocated to the Washington, D.C. area.

Clark also sees Worrell for thyroid and hormone treatments, and since Worrell is Lyme literate, Clark said Worrell has played a big role in supporting her through her treatment from Jemsek.

“Through the grace of God and the extraordinary care from Dr. Jemsek and Tammy Worrell, I am almost back to normal – 90 percent well,” said Clark. “I was lucky to go only five months. People go years, and they go blind.”

“Lyme is the great imitator,” since it’s plethora of symptoms can mimic other diseases, said Clark.

Some of her friends and fellow Lyme survivors have been misdiagnosed with fibromyalgia, chronic fatigue syndrome, Amyotrophic lateral sclerosis (ALS), multiple sclerosis, Crohn’s disease and sometimes even autism.

Worrell tests for the disease with the Lyme Western Blot, what she calls “the gold standard diagnostic.” Most physicians will use an enzyme-linked immunosorbent assay (ELISA) Lyme test, which is only 50 percent accurate, she said. The ELISA Lyme test checks for antibodies the patient’s body is making against the spirochete bacteria.

However, if tested too soon, the ELISA test may come back negative because the body hasn’t had a chance to produce enough antibodies, and if a dormant case is tested, the body may no longer be making the antibodies, said Clark.

Jill Clark will be decked out in lime green clothes and accessories all month, has hung a lime green bow on the door of her workplace, and is constantly posting lime green-laced images on her Facebook wall.

She’s joined local support groups, state chapters of national associations, and worldwide protests, but Clark is reaching out and telling her own story this May – Lyme disease awareness month – because for Clark, Lyme disease is personal.

People largely associate Lyme disease with the outward indications of a red bullseye rash or the presence of a tick on the skin. But Lyme can manifest itself in less obvious ways, mimicking other diseases, and can even lie dormant for years.

“It’s a wicked disease,” said Clark, who knows firsthand how Lyme can wreak havoc on a body.

In April 2009, Clark thought she had an ear infection, which got worse even after she took antibiotics. She went to a different doctor, who gave her Prednisone. Clark’s symptoms grew, and she felt like a tight swimming cap was squeezing her head. She couldn’t drive because a condition called oscillopsia caused her to see stationary objects as moving.

“I felt sensations of bugs crawling all over my skin,” she said. In hindsight, Clark realized the Prednisone shut down her immune system and “allowed the Lyme to grow rampant.”

Clark made more appointments with different doctors, and was told she had vertigo. On Mother’s Day in 2009, “My whole left side of my head was numb,” Clark said. A CAT scan at the emergency room revealed Clark had fluid in the left ear and doctors said she had an ear infection in the mastoid bone, behind her earlobe.

Antibiotics took care of the numbness, but Clark didn’t have an ear infection.

She had Lyme-induced encephalitis, which Clark eventually learned from the “Lyme literate” doctor – someone who understands the complexities of the disease and provides more in-depth treatment – who diagnosed her with Lyme disease.

Before the Lyme diagnosis, though, Clark was diagnosed with neuropathy, and had tests performed on her brain stem. She asked the neurologist to add a Lyme disease test to the battery of tests he was running. “He said, ‘Well, we don’t have Lyme disease in North Carolina.’”

That’s a common belief by the state’s residents and physicians alike, said Tammy Worrell, chief clinician at Piedmont Wellness Center in Greensboro, who is Lyme literate and diagnoses three to five patients a week with the disease.

“Even those specializing in infectious disease will question the results of an accurate diagnostic Lyme disease test when it comes back positive. This is because they have been told repeatedly that Lyme is not found in North Carolina,” she said in a statement given to the Times-News.

That’s what Clark was told, even though part of the Lyme test came back positive. She was given 30 days of Doxycycline and referred to an infectious diseases specialist in Burlington. “He told me, ‘If you had a big swollen red joint, or you had a bullseye rash, I would diagnose you. But you don’t,’” Clark said.

Finally, Clark had another Lyme test, which confirmed her suspicions. In Sept. 2009, she started going to South Carolina to see a Lyme specialist, Dr. Joseph Jemsek, who has since relocated to the Washington, D.C. area.

Clark also sees Worrell for thyroid and hormone treatments, and since Worrell is Lyme literate, Clark said Worrell has played a big role in supporting her through her treatment from Jemsek.

“Through the grace of God and the extraordinary care from Dr. Jemsek and Tammy Worrell, I am almost back to normal – 90 percent well,” said Clark. “I was lucky to go only five months. People go years, and they go blind.”

“Lyme is the great imitator,” since it’s plethora of symptoms can mimic other diseases, said Clark.

Some of her friends and fellow Lyme survivors have been misdiagnosed with fibromyalgia, chronic fatigue syndrome, Amyotrophic lateral sclerosis (ALS), multiple sclerosis, Crohn’s disease and sometimes even autism.

Worrell tests for the disease with the Lyme Western Blot, what she calls “the gold standard diagnostic.” Most physicians will use an enzyme-linked immunosorbent assay (ELISA) Lyme test, which is only 50 percent accurate, she said. The ELISA Lyme test checks for antibodies the patient’s body is making against the spirochete bacteria.

However, if tested too soon, the ELISA test may come back negative because the body hasn’t had a chance to produce enough antibodies, and if a dormant case is tested, the body may no longer be making the antibodies, said Clark.

The Western Blot is more sensitive because it tests for specific proteins on the surface of a Lyme spirochete – the bacteria that causes Lyme disease, said Worrell.

The problem of Lyme test inaccuracies prompted Attorney Susan R. Green, who represents Jemsek and a number of other Lyme literate physicians, to help draft a Virginia bill that has since become law, called the Lyme Disease Testing Information Disclosure Act of 2013.

According to the Virginia law, the information given out to patients who order Lyme disease lab tests includes the warning of false negatives and states: “If you are tested for Lyme disease, and the results are negative, this does not necessarily mean you do not have Lyme disease. If you continue to experience symptoms, you should contact your health care provider about the appropriateness of retesting or additional treatment.”

Before it was signed into law by Virginia’s Gov. Bob McDonnell in March, the bill was sponsored by the National Capital Lyme Disease Association (NatCapLyme), which has a Central North Carolina Chapter near Charlotte.

Clark has recently joined the chapter, shares information with the N.C. Lyme Advocacy group, meets with the Triangle Lyme Disease Support Group, and is thinking of starting a local Lyme disease awareness group in Burlington or Greensboro

Clark encourages anyone who suspects he or she has Lyme disease, or has symptoms of another disease that Lyme mimics, to find a Lyme literate physician for a diagnosis, and seek any extensive treatment from a doctor who’s a member of the International Lyme and Associated Diseases Society (ILADS).

“Education is the key,” said Clark. “If I had given up, I’d be dead by now. I kept digging.”

THE EXPERTS WEIGH IN

John McLean, chairman of the Central North Carolina Chapter of NatCapLyme

- North Carolina now has three counties that have been declared “CDC endemic,” or two U.S. Centers for Disease Control and Prevention-confirmed cases, for Lyme disease: Wake, Guilford and Haywood counties.

- There are also seven pending counties, with one CDC-confirmed case, in North Carolina: Cleveland, Gates, Perquimans, Pitt, Wilkes, Wilson and Carteret counties.

- Check your body and your animals’ bodies for ticks after being in a situation where you or the animals are exposed to woods or brush.

- If you find a tick attached to your body, save it by taping it onto a note card and write down the date it was removed – You must seek treatment within 48 to 72 hours for the antibiotic Doxycycline to treat or prevent Lyme quickly.

For more information on Lyme disease, visit ILADS at www.ilads.org, NatCapLyme at www.natcaplyme.org, and check out the “NC Lyme Advocacy” page on Facebook.